Chasing An Alzheimer's Cure

The other side of dementia

There is an aspect to dementia that you may not know about. If you have experienced it, you have my heart. Honestly, when it showed its face here, I faced terror like I’ve never known.

In the hospital, they called it a Psychotic Break. I simply refer to them as “episodes”, and yes, that clearly implies a plural.

It was her first day home from the hospital after her second sepsis diagnosis and 5-day stay. She’d been discharged fairly early in the day, and by midday was more than ready for a nap. So, I laid her down, kissed her on the forehead, and left her to get a little sleep. From downstairs, watching television, I heard her moving about a bit later but assumed she was getting up to go to the restroom. Then I hear her on the landing above me. “What are you watching that for?”

Obviously, I can’t relate the ensuing conversation verbatim, but something was wrong, and I knew it immediately when I heard the tone of that first question. This didn’t sound at all like my Jacquelynn.

Turned out, she saw a lot of people in the house who weren’t there, and was totally thrown. She perceived a crowd in the TV room when it was just me. Worse, she wasn’t quite certain who I was.

Without fully reliving several truly disturbing hours, I’ll tell you it took close to an hour, that first time, to get her back. When she finally snapped out of it, right after “You’re my Matthew”, she fell apart, collapsing into tears and imploring around the sobs “What’s happening to me?”

I called and spoke to her doctor, of course, and got lots of compassion and little help.

Over the next few days, this happened twice more, but she came out of it much more quickly both times. Until the fourth day after her discharge. I honestly don’t recall exactly how this one started, but it was clear right away that she just didn’t believe anything I said. She knew who Matthew was, but she refused to believe that I was him.

In the very first “episode”, what finally snapped her out of it was my shouting at her, in sheer, terrified desperation, “WAKE UP!” When I did that this time, all it got me was a very irritated “Hey, Lay off!” But confused as she was, she was very canny. She calmed down and began puttering about, picking things up and pretending to clean. I took advantage of the lull to call the doctor again and try to get some advice, and as soon as I was good and fully distracted, she made her break for it. I saw her slip out through the laundry room and into the garage, and I hightailed it after her. Stopping her just before she got out of the garage, she fought me. She had to follow “him”, she’d said. There had been indications that she’d seen someone else in the rooms with us most of this episode, and now she was taking instructions from him, running from me, whom she perceived as keeping her prisoner in the house.

As soon as she got violent with me, I hung up from the doctor and called 911. While fighting to keep from hurting her and to keep her from running out into the highway (Montgomery Road is essentially our back yard, and it’s a very busy street), I described the situation to the operator, with Jacquelynn shouting “He’s lying!” to my phone. She yelled for help and shouted “FIRE” at the top of her lungs. It was when she screamed for Joyce, our neighbor and her very best friend, that I instantly knew what to do. So I hung up on the 911 operator and called Joyce in a panic, begging her to come help.

This wasn’t as easy as it sounds, as Joyce’s husband Bob was in horrible shape by this time, and demanding all her time and energy.

But Joyce ran right out, and I released Jacquelynn to run into her arms. Shortly, the police arrived, followed soon by the ambulance. She was terrified of me, and terrified of what had happened to Matthew. When the paramedics asked her if she knew who Matthew was, she said I was her world, that she loved me and I took care of her. When they pointed to me and asked if she knew who that man was, she just said, in the quiet, frightened voice of a child afraid of the monster under her bed, “bad”.

As always happens when police and ambulances show up at your house, half the neighborhood came out to see what was going on, and they all figured out pretty quickly that something was seriously wrong with Jacquelynn.

I obviously didn’t ride in the ambulance with her. I waited a while to even go to the hospital, convinced I was at least part of the problem. I made sure the medics had her ID, and I waited. And I fell apart. After calling the doctor again, I heeded their advice and called the Emergency Department after about an hour. The nurse there told me she was much calmed down and asking for me repeatedly.

This stay was only two nights. Jacquelynn had another episode that evening, while I was trying to sleep at home (it had been the consensus that my presence may precipitate another break if she awoke and saw me there). I received a call from her cell, and it was her nurse. All I could really make out was Jacquelynn screaming my name in the background, begging for my help, so I half-dressed and sped to the hospital at two-to-three times the limit.

She was calmed when I arrived, and I never left her side again during that stay. The next day was nothing but tests. EEG, CT, MRI, and an increasingly impatient and infuriated Jacquelynn. Her innate claustrophobia is quite amplified by her present condition, and both the CT and the MRI cause her deep distress. Much of this she took out on me, but I knew where it was coming from, so I did what I could to keep her calm, and struck a line under any more tests that day. We would be returning to her room for the remainder of the day, and they would keep their damned machines the hell away from her.

The next morning, after a ridiculous video conference interview with the neurologist, Jacquelynn was discharged. We were just a bit stupefied. What in God’s name had happened to her, and what the hell are we going to do about it?

Well, we’re prescribing her this drug, which is what calmed her the other night. But what caused these “episodes”? No one knows. With dementia, this is what happens.

No. Other. Answer.

This is what happens.

That was March. There have been two very minor such episodes since. The worst of those was just a few weeks ago, and a call to her brother helped to restore her balance and her trust in me. At least enough to get her to go back to sleep, and when she woke up in the morning, everything was fine.

It is these events and the possibility of them recurring which most frightens me day-to-day. I don’t exactly live in fear, but this is why I don’t let her sleep alone and was undeniably my #1 source of fear when I was going to work every day. What if this happened when I wasn’t there and her hallucinatory friend led her away on foot? What the hell would I do then?